On Monday 26 June we held a day of action for Orkambi calling urgently on the drug’s manufacturer Vertex, the NHS and governments across the UK to agree on an affordable price that can make the life-changing drug immediately available to those who so desperately need it.
The cystic fibrosis (CF) community protested outside of Holyrood, Stormont, the Welsh Assembly and Downing Street, while hundreds of people with CF and supporters took part at home by sharing their stories on social media using the hashtag #OrkambiNow. Read some of the stories shared by the community online.
Trust Chief Executive David Ramsden wrote to Vertex and the NHS in all four UK nations appealing to them to reach an agreement on pricing for Orkambi and end the wait. Read the responses from NHS Scotland, NHS Wales, the HSC Board in Northern Ireland and Vertex Pharmaceuticals.
Read the letters
We will be sharing the responses from NHS directors and Vertex as and when we receive them – please continue to check back for further developments.
Download a list of all the parliamentarians across the UK who have supported our Orkambi campaign.
Keep sharing your stories
Keep sharing why you need #OrkambiNow by posting your own stories on Facebook or tweeting them to us @CFTrust.